Invisible Disability: Unmasked

Image reads: Not all disabilities look like {wheel chair icon}. Some disabilities look like {person standing icon}.

It was sometime in 2015, I was excited and proud because I’d asked for my first accommodation the day before. I was 29 years old. It was simple — I asked for a different chair, one less likely to trigger pain that would distract me from class. Up until this point I hid in plain sight, pretending for everyone else that I wasn’t battling a lifelong chronic illness and pain condition, pretending for even myself that I wasn’t on the spectrum in more ways than one. This pretending took a lot of energy, nearly all my spoons on any given day, leaving me very little for basic living. But that day I wasn’t pretending quite as much. That day I was going to get a simple thing that I needed, because I’d finally felt safe enough, empowered enough, to ask. What I wasn’t ready for was the label.

As I walked into class, there was an 8.5 x 11 sign on the desk that read, “This station is reserved for a student with disabilities.” Under this statement was a large wheelchair user icon. I spent 20 minutes crying in the restroom before putting on my pretend face again and returning to class as if nothing had happened. As if I hadn’t just been outed not only to a room full of strangers but more importantly to myself.

I’d been taught by a WWII military family for whom neurodivergence is common but that had none of the language or resources many take for granted today, that I had to hide to survive. I was told that if I were viewed as disabled or too different, especially as a female, doors would slam shut, doors that lead to even basic needs being met. There was also an unspoken fear of violence. The gist was clear: who and what I was, wasn’t allowed, period. I had to learn to be someone else. Little did I know that this tear-filled roller coaster of a day in 2015 would be the beginning of the greatest adventure of my life to date.

Owning the word “disability” was difficult, but it set me free and began to heal wounds passed down through generations. Six years later and a lot has changed. Not so much in who I am but in how I understand myself, how I feel about them, and how I talk about them. I’ve gained descriptors like cPTSDNeurodivergence, Cognitive Disabilities, and Spectrum, pronouns that acknowledge my experience of plurality and gender fluidity, as well as titles like software engineer, accessibility developer and business owner. Today, I’m excited because the ball is rolling on 2 things. One, I’ve been asked to be on a panel about neurodivergence for the Ada Developers Academy. This is a scholarship-based coding camp and internship program for women. Two, starting in February, I’ll be mentoring an Ada student who is about to take their first step out of bootcamp and into their first software engineering role. The panel will be the first time I acknowledge publicly that I’m someone living with disabilities. I’m also working with 50 or so engineers, most with disabilities of their own, teaching them about accessibility and helping them get the experience they need to break into the field. My hope, in addition to growing awareness, is to help others on the spectrum avoid the blockers that I experienced in finding work after education. My hope is also to heal a bit myself.

Looking forward I’m apprehensive. Standing up for others was easy. Standing up for myself, claiming myself, my whole self, that is terrifying.

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